Dear Future Self – What Is Our Family’s Autism Future?

This is Day 14 of the Ali Family #AutismTruths – April 14, 2017.

Dear Future Self,

I would like to know you so much.

I would not like to know you.

Like many a parent of an autistic child, a large part of my brain and mental self is consumed by thoughts of the future, specifically D’s future, what it will look like, our places in that future and what all it will entail.

It shapes nearly everything I do or plan to do; it shapes most research and all-consuming thoughts I have. This past year, my constant thinking and trying to make some progress in figuring out things for D’s future coupled with some other things I was struggling with got me to a point where I felt like I was living in a perpetual state of worry-sadness.

The husband tells me to not worry so much. That we will always be there for D and will have a good system in place to help support him, care for him and foster as much independent living for him as possible. Well, that’s not exactly what he says, but I know that’s what he means.

But here’s the thing – those things just don’t happen – poof! – like that.

When he says – don’t worry, what he may or may not know deep down inside is that he is not worrying in the way I am, because I am one taking the lead on all of this.

It takes research, attending seminars, talking to families who have gone through the transition, learning about the various kinds of power of attorney and guardianship, housing options, social security benefits, disability income, which government agencies are supposed to be providing services and support and how to get the ball rolling with them. It takes reading books, articles, more talking to organizations, educators, parents, autistic adults and others.

It takes getting a functional and appropriate IEP (individualized Education Plan) in place from the get go, and constantly tweaking that IEP year after year – adding vocational skills, crucial academic skills, social behavior skills, to help your loved one prepare for a post-secondary life. Is your child on track for a high school diploma? A GED? A different kind of certificate? What would be best?

What does his post-secondary life look like? Is college in his future? Vocational school? Vocational training? Does a job await him? Volunteer work? Adult day services? What does he want? What are his desires for his future? Once that is somehow figured out, how do you figure the other stuff out? How does he find a job or college where his unique challenges will be supported and skills utilized?

Jobs just don’t appear like that. One just doesn’t have Adult day services waiting for them when they graduate. Who pays for everything? Who continues to provide support and education once your loved one reaches the age of 21/22 and ages out?

That’s only 5-6 years away for D.

All I have right now are questions. The more I find out, the more I research, the more meetings I set up, the more questions I have. The more uncertainty, the more worry.

I think about other things, too. I hope at some point A and H will get married, and they’ll have some amalgamation of our traditional Big Fat Hyderabadi Wedding. But those weddings are the antithesis of everything that is D. How will he be able to attend his siblings’ weddings? How will we able to host everyone and manage everything while keeping D’s life stable?

What a thing to worry about, right? Future weddings of D’s siblings and how that will all play out.

But that’s where I am right now – simultaneously thinking about and not thinking about everything.

What does our life look like, Future Self? I want to know, and I don’t want to know. Not knowing keeps our options open and fluid. But not knowing is a quagmire of worry, thought and perpetual research that sometimes impedes me from enjoying the now – living in the now.

Is D living with us? Do we have a good caregiving support team in place for him – a team that is relatively stable and not in a perpetual state of coming and going? Is D living in a supported living community? If so, how is he managing? He pretty much only eats Desi (South Asian) food cooked how I cook it. Who cooks for him? Can he cook for himself? Does he eat other types of foods, cuisines?

Is he able to independently attend to his personal needs? I worry about being 60 years old and still supporting him in these self-care functions. I worry more about trusting someone else to do it. I so want D to be able to do these things for himself, and he has been working hard to learn these things for years. Does he achieve independence in these things?

Does he have a job? Does he have a good daily routine? Dear God – is he happy? Is he at peace? Does he feel self-fulfilled, living a life of dignity and respect? Are we happy – his Baba, sister, brother and I? Are we able to live our lives independently and as a family?

What can you tell me, Future Self, to ease my worry? What can you tell me to help me sleep better at night? I know I am doing my best right now to put the plans in place.

But, is my best enough?

Yours,

Present Self